The 'I' in LGBTQI: What it's like growing up intersex

Can you imagine what it would be like to have never met anyone like you?

That’s the reality for many young intersex people.

“Intersex is a word for people who are born with sex characteristics that don’t meet medical or social norms for what it means to have a female body or a male body,” says intersex activist Morgan Carpenter.

The term “intersex” covers a whole range of biological variations. Sometimes they are discovered before you’re even born, sometimes at birth, or when puberty hits. In some cases, they are never discovered. Having an intersex variation, can mean having ambiguous genitals.

“At birth, we know that if an intersex trait is visible that can result in an immediate appointment with a surgeon,” says Morgan.

Intersex advocate Morgan Carpenter at Mardi Gras.

triple j Hack: Sarah McVeigh

'Trying to present as a guy was weird'

Eve, 23, first realised she was intersex four years ago.

“My partner at the time took one look at me and said I think there’s something - not wrong with you - but different,” she says.

Eve was assigned male at birth and identified that way at high school. But puberty came really late - at around 17 - and when it did it came with a surprise.

“My body started developing feminine secondary sexual characteristics. My hips widened, I grew breasts. Being in high school and trying to present as a guy was weird,” she says.

“I didn’t fit in, I got bullied because I was different.”

A 2015 survey of 272 intersex people found that 18 per cent don’t finish high school. That’s compared to just two per cent in the general population.

The survey also found that 60 per cent of the participants had thought about suicide, and almost one in five had attempted it, on the basis of issues related to their genital variations.

Cody marching in the Mardi Gras parade

Sarah McVeigh

‘Normalisation’ surgery is still common

Cody describes themself* as an “out and proud intersex person” but it wasn’t always this way.

“I have exercise books from when I was 10 and wrote about feeling like a space alien.”

It wasn’t until adolescence that Cody found out the truth.

“I was 17 and my Mum sat me down and explained it all to me.

“[She said]… you know how we’ve always told you you were born a girl, well it was a little bit more complicated than that. She gave me a big green folder filled with a lot of stuff about intersex and that’s when I started learning.”

But long before that conversation, decisions had already been made about Cody’s body.

“I did undergo what’s known as medical normalisation,” Cody says.

“There were some surgeries that were done when I was an infant and later on I underwent hormone therapy.”

Surgical intervention is a common story in the intersex community.

The Director of the Department of Endocrinology at Austin Hospital, Professor Jeffrey Zajac, says parents sometimes put pressure on doctors to operate.

“When a baby is born, the first question that anybody asks - the first question that parents ask - is ‘is it a boy or a girl?’

“With intersex babies, there can be some problem with the genitals. There’s quite significant pressure on the medical staff to resolve this issue,” he says.

But Morgan Carpenter says parents are often not given enough information about intersex variations before consenting to surgery on behalf of their babies or children.

“Our experience is that parents don’t get very good information that people can grow up living healthy happy lives with bodies that look different.”

Steph and Elise at Mardi Gras.

triple j Hack: Sarah McVeigh

'Take your body back'

In December, the issue made headlines when parents of a five-year-old known only as Carla went to the Family Court asking for permission to get surgery on their child

Carla was born genetically male but with ambiguous genitalia. She had male gonads inside her body.

The court ruled the parents didn’t need permission to arrange surgery and her gonads could be removed.

Elise, 26, had her male gonads removed when she was very young, along with a vaginoplasty “to reconstruct it to look aesthetically like a vagina”.

“I feel angry. I feel saddened as well,” she says.

“Although the world is changing in a wonderful way these invasive surgeries still happen to intersex children.”

She says the surgery to remove her gonads has resigned her to a life of hormone replacement therapy, which she describes as a “goddamn horrible thing”.

Cody celebrates being intersex now, but says there’s still a fight ahead for the rights of intersex people.

“I definitely want to see an end to medical normalisation.

“The common story between intersex people is to be stripped of autonomy and to feel alienated and isolated about it.